At the July 13 and 14 conference “Navigating Conflicts When Parents and Providers Disagree About Medical Care,” 250 concerned physicians, bioethicists, social workers, hospital administrators and medical specialists from diverse backgrounds and several countries convened to hear industry leaders discuss issues that defy definition.

What does “in the best interest of the child” mean, and who gets to decide? What is “futile treatment?” It depends on context and who you ask. Terms like “viability,” “lethality,” “medically necessary,” “mandatory treatment” and “extraordinary means” all lack precision in today’s medical climate, where life can be extended, treatments can be embraced or refused, parents of widely varying backgrounds now proactively weigh-in, and physicians are no longer limited to their previously simple black bag of tools. When “quality of life” means various things to different people, complex medical decisions become extremely difficult.

In our melting pot of cultures with widely different views, the practice of medicine is fraught with controversy, especially in pediatrics where patients usually can’t speak for themselves. Who determines what’s best for each individual child? Is it the pediatric physician who thinks she knows what is “medically feasible,” or the parent with a religious or cultural code dictating what they feel is right for their own child? The dictionary is still being written, but “definitions just can’t do this moral work,” according to Norman Fost, MD, MPH, director of the Program in Medical Ethics, University of Wisconsin, and former chair of the American Academy of Pediatrics Committee on Bioethics. “The role of conscience in providing medical care is not clearly codified.”

What’s a physician to do with a Hmong mother whose toddler needs abdominal surgery to prevent serious illness or death, but she refuses because she believes opening her child’s body cavity “lets the spirit out?” Or what of the Christian Scientist parent who refuses insulin while their child faces diabetic coma? What about a Jehovah’s Witness family who declines blood transfusion for their child during surgery? Evangelical Christian parents may prefer to wait for a religious miracle than receive medical intervention for an ailing daughter. The family who embraces traditional Chinese medicine or complementary and alternative medicine may seek untested herbs over pharmaceuticals for their son with a critical infection known to be cured by a simple antibiotic.

As the most complex cases play out there’s an additional legal kicker. At what point should a physician call in Child Protective Services and ask the courts to mandate medical care against wishes of parents who believe they’re doing the right thing by withholding recommended treatment? Alternatively, “so far no court in the United States has ever denied the wishes of a crying mother who seeks treatment to sustain life, even against advice of physicians who determine her child will remain in a persistent vegetative state, with no hope for any ‘quality of life,’” said John Paris, SJ, PhD, professor of bioethics, Boston College. Reverend Paris adds, “Children are not property of their parents. Once born, a baby has individual rights, regardless of what the parents or physicians may want.”

Because we have the ability to sustain life doesn’t mean we always should. At some point medical intervention runs into the slippery definition of “futility.” What was once medically futile has become possible, so at what point should parents or physicians stop trying? Since children are generally incapable of providing their own medical directives for care, physicians and parents are in the precarious position of deciding for them. Insurance companies also dictate what care is possible. “Costs balance reward and risk, playing a role in ethical decisions. How much is too much to proceed? Insurance coverage decisions are a form of collective decision making,” said Benjamin Wilfond, MD, director of the Treuman Katz Center for Bioethics at Seattle Children’s Hospital. “Because quality of life is so hard to measure and define, we are sometimes reduced to talking about costs.”

It gets even murkier when care options for disabled and developmentally delayed children are considered in the bioethics community. Should such children have equal rights to receive organ transplants, when donated organs are such a scarce commodity? “There is some line beyond which listing for organ transplant is no longer prudent,” said David Magnus, PhD, director of the Stanford Center for Biomedical Ethics. A related controversial topic was whether parents, siblings or other relatives should place themselves at risk as live donors to provide organs for a child, regardless of that child’s prognosis or suitability for transplantation. “Should physicians permit parent donors to expose themselves to different degrees of risk for their child rather than strangers?” asked Lainie Friedman Ross, MD, PhD, associate director of the MacLean Center for Clinical Medical Ethics, University of Chicago.

On the separate issue of parental refusal of care Dr. Ross adds, “As physicians we must look long and hard before we call any parental refusal of diagnostic testing or treatment ‘abuse or neglect.’ Parents should have the right to make decisions for their child.” Additionally, “The capacity of some children to participate in decision-making regarding their own care should also be recognized,” according to Douglas Diekema, MD, MPH, professor, Division of Bioethics, University of Washington School of Medicine.

Encouraging dialogue about these controversies in pediatric care, the conference did not seek to provide concrete answers but instead explore some of the tough questions currently facing physicians, parents, courts and state governments. The changing lexicon of pediatric bioethics is struggling to catch up to today’s technologically complex medicine, as parents and physicians write the codes for tomorrow.

For more information about all of the conference speakers, agenda or to view the archived Web cast of the entire conference please visit http://www.seattlechildrens.org/bioethics/. Next year’s annual bioethics conference is scheduled for July 25 and 26, 2008. This event will cover “Predicting the Future: Genetic Testing in Children and their Families.” Experts from around the country will meet to discuss complex ethical issues surrounding the use and practice of genetic testing in pediatrics. The annual bioethics conferences are held at Bell Harbor International Conference Center on the waterfront in Seattle, Washington. Details and agenda will be available in October, 2007 at http://www.seattlechildrens.org/bioethics/.

About Seattle Children’s

Consistently ranked as one of the best children’s hospitals in the country by U.S. News & World Report, Seattle Children’s serves as the pediatric and adolescent academic medical referral center for the largest landmass of any children’s hospital in the country (Washington, Alaska, Montana and Idaho). For more than 100 years, Seattle Children’s has been delivering superior patient care while advancing new treatments through pediatric research. Seattle Children’s serves as the primary teaching, clinical and research site for the Department of Pediatrics at the University of Washington School of Medicine. The hospital works in partnership with Seattle Children’s Research Institute and Seattle Children’s Hospital Foundation. For more information, visit www.seattlechildrens.org or follow us on Twitter or Facebook.

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